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Last Sunday was Celiac Disease Awareness day. Celiac Disease Awareness brings me to this post on the diagnosis of Celiac Disease. The diagnosis can be tricky for a number of reasons. The signs & symptoms of Celiac Disease can vary from person to person, so while one person may present with gastrointestinal symptoms, another may present with neurological symptoms, another with skin symptoms (Dermatitis herpetiformis (DH), which is the skin manifestation of Celiac Disease), or possibly even no symptoms at all. You may be wondering how that last circumstance is even possible, but it is. Celiac Disease is genetic, and often after the diagnosis is made, other family members are encouraged to go & get tested. The people who are diagnosed with Celiac Disease that have no symptoms are called “asymptomatic”.

If you suspect that you or someone you know may have Celiac Disease or gluten intolerance, the first step should be to see your doctor & ask for the Celiac Panel. This is just a simple blood test where the doctor is looking for the presence of specific antibodies. If this test comes back positive, an endoscopy with biopsy of the small intestine is then performed to confirm Celiac Disease. Celiac Disease is not an allergy, but an autoimmune disorder. Gluten sets off an autoimmune response in those who have Celiac disease, which results in damage to the villi (small fingerlike structures that aid in absorbing nutrients). The only “cure” for Celiac Disease is to follow a life-long gluten-free diet.

Diagnosis is not always so cut & dried. Some people can test negative on the Celiac Panel and still test positive on the endoscopy/biopsy. Some people can test negative on both, yet still react when consuming gluten; these people therefore feel better following a gluten-free diet. Some people will have a positive Celiac Panel and opt to try the gluten-free diet and skip the endoscopy/biopsy. This is a personal decision and should not be entered into lightly. Once you embark on a gluten-free diet your body can begin to heal fairly quickly. The tests will likely be skewed if you were to be following the gluten-free diet while having the testing done. It is necessary to be actively consuming gluten while getting the Celiac Panel and/or endoscopy/biopsy done in order to get accurate results. There have been numerous discussions and various opinions on how long after one resumes consuming gluten that accurate results are possible.

Gluten intolerance can be defined as a condition where one reacts in some way to gluten, yet doesn’t have the diagnosis of Celiac Disease, for whatever reason.

I was not diagnosed with Celiac Disease. My Celiac Panel came back positive and I went gluten-free (not knowing any better) and I felt a huge difference within 24 hours. I saw a GI doctor a week or so later who wanted to do the endoscopy/biopsy after having me go back to eating gluten. I opted not to, because I obviously had an issue with gluten, and you couldn’t pay me to eat it again. In my opinion, if someone feels better not eating gluten, who cares what you call it! Now, that being said, when my son Jon was tested & diagnosed, I knew better about not going gluten-free before the testing was finished and went ahead & had the endoscopy/biopsy done on him. The main reason I did this was because I couldn’t sentence my then 10 year old to a life-long gluten-free diet without being absolutely sure that he had Celiac Disease. I knew that later on the diagnosis would help to keep him on the diet into his teen years & adult life as well.

I hope this post helps someone out there. 1 in 133 people in the United States has Celiac Disease. Only 3% of those people are diagnosed. 97% are undiagnosed and even possibly misdiagnosed with something else, such as IBS (irritable bowel syndrome). I was told for several years that I had IBS before I even knew what Celiac Disease was. Yes, I had an irritable bowel – it was being irritated by gluten! There are plenty of people out there who have symptoms, but they aren’t bothersome enough to get tested. Undiagnosed Celiac Disease can cause a host of issues on down the road, including some cancers!